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https://www.elaros.com/ ELAROS is a private company that works with the NHS to provide digital apps and websites, including patient apps where they can fill in PROMs, and access to these by clinicians. The initial aim, I think is for it to be used particularly for Long Covid clinics to track...

Would it be possible to ask for the statistical analysis plan in detail, including which tests were used on which data points and why? And to ask for another statistician to reanalyse the data using what they consider appropriate tests? I'm sorry my stats is too rusty to be useful.

There is the additional problem of people being too sick to tolerate the help they need with things like bathing, so ending up living unwashed. I have reduced the support I pay for because I find dealing with carers too exhausting.

I think this is difficult. ME/CFS has such a fluctuating pattern for many people that you can't even contemplate going back to employment until you can be confident you can sustain it, and then you can't tell whether you can actually sustain it until you have been back in work for months or even...

I have done the survey. I think it's fine. It is pretty basic about what kinds of CAM you have used, whether you plan to use them, whether you got side effects and whether they were helpful. And a few questions about your chronic illnesses and general state of health. Also whether you trust CAM...

I think that's the bit about it I find most alarmingly unscientific. They did one inappropriate test not validated for pwME on a tiny set of pwME and controls, and extrapolated their misinterpretation of the results as if it explained everything about ME/CFS. I don't get how this passed peer review.

Another study with antibodies and mice: Preprint Transfer of IgG from Long COVID patients induces symptomology in mice, 2024, Vidarsson+ Comments from Nath on both these studies: https://www.s4me.info/threads/news-from-the-usa-united-states-of-america.20771/page-10#post-539459

Some posts have been moved to more relevant threads: USA: NIH National Institutes of Health USA: The RECOVER Initiative - Long Covid research Long Covid Moonshot Initiative Dr Avindra Nath, NIH USA, views on ME/CFS and Long Covid USA: Mount Sinai PACS clinic and Dr Putrino USA: News from the...

Can you copy the relevant bit, or photograph the pamphlet and upload it to the forum? It may be an attempt to write in 'plain English' a description of PEM.

You can tell something is a scam by the name they give their product. We're building up a collection, with Lightning Process, Crysallis effect, and now the Born Free protocol. I'm sure there are more. Perhaps pacing needs a new name. Any suggestions? I remember being horrified when OMF invited...

Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study, 2020, Jason et al Article | Thread Abstract conclusion: Conclusion At baseline, those who developed ME/CFS had more physical symptoms and immune irregularities, but not more...

We have already had a lengthy conversation with Leisk a few years ago. There was no foundation to his protocol other than his imagination and his intention to set up a business selling the supplements as far as I can see. He is a fitness trainer with no medical or scientific training. This is...

@sarahtyson can you give us an update? If you don't want to do it here, perhaps ask the MEA to do an update on their website.

I've lost track of what's happening in this project. As far as I remember, there have been 3 questionnaires so far, one on symptoms, one that was supposed to be on PEM but mixed it up with all symptoms after activity, and one on function. I think there are supposed to be 2 more. Has anyone heard...

What on earth does he mean? I assume he's referring to the arbitrary point at which many doctors and guidelines switch from calling the problem post viral to ME/CFS. He makes it sound like ME/CFS only lasts 6 months, or perhaps it doesn't start until 6 months after infection. Either way, I think...

I think a useful partial parallel might be diabetes where it is necessary to 'pace' intake of carbs and insulin. However well the diet and insulin are controlled, it doesn't cure diabetes, but does help to avoid 'crashes'. They are management strategies for avoiding worsening, not cures.

I have no idea, but his focus is going to be on sorting out the doctors' strikes and getting waiting lists down. I hope the ME and Long Covid situations won't be completely squeezed out but they aren't likely to be on his radar for some time yet.

GF bread is awful. I don't try to replicate bread, when I want a 'sandwich', ie something to spread things on and eat for a snack or meal, I use rice cakes, corn cakes, lentil cakes. I think the simplest way to handle a GF diet is not to try to find direct replacements for the things you can't...

Good to hear from you, @Daisybell. I hope you can participate in the trial.

I haven't been following this thread much. I think a key point, surely, is that this test is designed for use with physically healthy people to test for anhedonia. Using it for people who are likely to be physically and cognitively fatigued and feeling very unwell at the start and become more...